Elisabeth Dykens, Ph.D., received the 2018 Rare Impact Award for Research of the National Organization for Rare Disorders. The NORD Rare Impact Awards were presented on May 17 in Washington, D.C., at their annual awards ceremony.
Dykens is professor of Psychology & Human Development at Vanderbilt’s Peabody College of education and human development, and is professor of Pediatrics and Psychiatry & Behavioral Sciences. She also is co-director of the Vanderbilt Kennedy University Center for Excellence in Developmental Disabilities (UCEDD).
As a clinical psychologist and researcher studying rare genetic syndromes, Dykens has long been a leader in the field of intellectual and developmental disabilities. Since she began her research in the late 1980s, she has come to be regarded nationally and internationally as an authority on behavioral phenotypes.
In recent years, Dykens has focused her research on behavioral studies of Prader-Willi syndrome (PWS) and Williams syndrome. She was the first researcher to describe cognitive profiles and compulsivity in persons with PWS. In addition, her research on both PWS and Williams has led to the development of clinical trials. She has over 150 peer-reviewed publications. She has received various honors including the Association of University Centers on Disabilities Outstanding Achievement Award in 2011.
Dykens was an early proponent of positive psychology in intellectual and developmental disabilities. Her recognition and promotion of positive characteristics of persons with rare genetic syndromes has offered a new lens with which people view the field.
In her comments at the NORD Award Ceremony, Dykens said, “My passion for people with intellectual disabilities and rare disorders started with my own family. My father was a psychiatrist, and a perk of his job as a state commissioner of mental health was housing on the grounds of a large, state psychiatric hospital. I spent my adolescent years hanging out with patients in my back yard, moved by their struggles, bemused by their quirks, and in awe of their strengths. I learned firsthand that competencies coexist with disorders, and carried this lesson forward into my research.”
As important as her scientific achievements are for the advancement of research, she also has had an invaluable role in improving the lives of individuals with rare disorders and their families by serving as a friend to the community.
“The real heroes are the families and individuals themselves. It has been nothing but a pleasure to share their struggles and strengths with them. I feel honored to do that.”
As the co-director of the Vanderbilt Kennedy Center for Excellence in Developmental Disabilities, one of her first research projects involved establishing the Academy of Country Music (ACM) Lifting Lives Music Camp for People with Williams syndrome, a week-long residential camp studying the connection between individuals with Williams syndrome and their love for music. While serving to study Williams syndrome, the camp also provides music enrichment, education, and opportunities for independence and flexibility advancements for campers. In the years since the camp started, 40 peer-reviewed articles have been published and campers have learned valuable life skills that have led to employment opportunities. For Dykens, this is especially gratifying.
Outside of her work with the research team, she has served as a Board Member for Special Olympics International and on the Scientific Advisory Board of the Prader-Willi Syndrome Association.
NORD is the leading independent nonprofit organization representing the 30 million Americans with rare diseases and the organizations that serve them. NORD, along with its more than 270 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
Drs. Marshall Summar, Chairman of NORD Board of Directors, with NORD Rare Impact Research Award recipient Elisabeth Dykens and Robert Hodapp.
Last Updated: 6/11/2018 8:52:49 AM
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